Friday, March 30, 2012

The Longest Post Ever

Nyah-Nyah! Kept you waiting. How'd YOU like that feeling? Just wanted you to have a taste of it.

Kidding. If you've checked on Facebook, you know that the CT scan and bone scan results were all clear of cancer. We can all breathe again and celebrate this Best Breast Cancer Ever as just that: breast cancer. Interesting fact, though. If it HAD been found in my liver or bones or whereever, it would still be breast cancer. The cells originated in the breast and have breast cell characteristics as they travel and start forming tumors elsewhere. So if the news hadn't been good today, I wouldn't have been reporting colon cancer. I'd have been reporting that my breast cancer metastasized to my colon.

But back to me, and my non-metastatic cancer. Woo-hoo! I'm going to go against the policy of this blog and tell you about my awful day yesterday. However, since I'm breaking my own rule of optimism and positivity (I make the rules, so I can break them, right?), I'm going to write the bad stuff in italics. If you want to skip the italics, I'll meet you back at the bottom of this post when I start writing in regular font again. Actually, there's a lot of cool info here like that metastatic stuff above, but my experience was crappy. Anyhow, here we go:

Yesterday (Thursday) I was scheduled to have a CT scan and then bone scan to look for that metastatic cancer and then today (Friday) I was scheduled to have my chemo-teach (a hour+ session with a nurse who can walk me through everything I need to know about having chemotherapy and answer all of my questions) and then go over to the hospital to have a port inserted into my collarbone area (a little tube/hole thingy so that they can give me my IV chemo drugs without having to poke me with needles all the time).

So I lined up my childcare for two straight days (thanks to Jennifer, Julia, Kurri, and Holly), did some carseat shuffling, and was off to the CT scan at 7:45am. Upon arrival, I was given a huge, I mean large McDonalds size huge, drink of this red punch-like solution that would make my body show up correctly on the CT scan. I had to finish it in 45 minutes and then it would be my turn to be scanned. While I was drinking and waiting, the hospital called my cell phone to tell me that my arrival time for the port insertion would be 2 hours before the scheduled time. But that was during my chemo-teach. (Oh, I forgot to mention, if you ever get cancer, you do not get to choose appointment times. They are made FOR YOU with none of your consent. So I didn't schedule this conflict. They did.) So I went to the desk at the oncology center where I was waiting and shuffled myself to an earlier time slot. Then patted myself on the back for handling this crisis seamlessly and went to finish my god-awful punch.

Soon, it was my turn for the scan. Nurse inserted the IV into my left arm (did I tell you that because I now have no lymph nodes in my right armpit, I'm never to have a needle in my right arm for the rest of my life?), and pressed whatever solution was in there through the needle. I felt a huge amount of pressure on my arm and one nurse yelled to the other nurse, "Stop!" It seems the needle had busted right out the other side of my vein and the solution didn't go where it was supposed to. So the arm started to swell (hematoma) and I started to cry, less from the pain than from the fear of something going wrong. Ice pack, deep breaths, and we moved forward, finding a vein approximately an inch away from this huge lump in my arm because the right one is out of service. I was still weepy walking out of there, but washed my face and headed off to the bone scan.

Since it's a separate department, though in the same building, I had to again show my insurance and co-pay another $10. Normally, I'm eternally thankful for our great insurance plan, but in my emotional state, I nearly cried again. Just the inconvenience of having to get the wallet out while holding an ice-pack to my swelling arm. But soon I was called in for a new solution to make my bones glow. Seriously, before a bone scan, they make your bones radioactive (low level, like what's in a banana), you wait another 90 minutes, then they can take pictures and see inside your bones. So I sat in the chair while the nurse injected this radioactive stuff into me. While I was there, she asked, "Do you have young children at home?" I thought she was reading my red swollen eyes and trying to make pleasant conversation, so I replied, "Yes. A 2-year-old and a 4-year-old." She said seriously, "Can someone else take them for the rest of the day? You'll be radioactive." I just started bawling again. I THOUGHT I was prepared. Childcare - check, 4 appointments in 2 days - check, food in bag for long waits - check, co-pays - check, radioactive Mommy - WTF?!?! Wouldn't this be important to mention BEFORE I arrived that day?

So I left the room for my 90 minute wait and called Paul and Kurri. Kurri would pick the girls up from preschool and Paul would leave work early to take them for the rest of the day. Then I got to sit and wait and try not to cry. The mean nurse who told me to stay away from my kids did tell me that drinking water will help it spread and dissipate, so I chugged about a liter of water right away.

My story's not done, but here's a super part, so I'm exiting italics mode for a little bit. Because of my hematoma, the nurses from Dr. Kirshner's office had been alerted and actually called to see me to check out my arm during my long wait for the bone scan. They had to use my leg for my blood pressure as they checked me in (if you were reading the italics, you'd know why), but once I was in the examination room, both Katy and Maggie, the nurses who I'll be working with through this whole cancer process, came to see me. What wonderful women!

While she checked my arm, I was telling Maggie that I wasn't sure if I wanted a phone call with the CT scan and bone scan results as soon as they were in, or if I just wanted to wait until morning when I was going to see her again anyhow and Paul would be there. She said she'd see if she could get an exact time so she could call when Paul was home, and went to the computer in the exam room. She clicked around and then said, "Um, I have to check the other computer. I'll be right back." Literally about 2 minutes later, she returned with a print-out in her hand and said, "CT scan is clear. Got it already." I started giggling uncontrollably, hugged her, thanked her a thousand times, and promised that I'd be in much better shape when she saw me tomorrow.

Uh-oh. Back to italics. Still waiting for the bone scan, I went back to drinking my water, but was feeling a little nauseous and I was starting to get a headache. Luckily, they called me a few minutes before my 90 minutes was up and I got to lay on a table to be scanned. This machine was really slow and I'd say I was laying there about 20 minutes for a never-ending series of pictures. I passed the time by counting in my head, and each picture took between 180 and 200 "seconds". Ouch, my head was getting quite painful by the end, but at least it was over. 

There was no way I could've waited for results, and I probably shouldn't have driven home feeling that awful, but I made it into the house just in time to puke in the closest bathroom. This puke-fest, accompanied by a horrible migraine and some diarrhea, continued for about 6 hours. I did call the oncology office just to make sure this wasn't some dangerous reaction, and though them calling back took over an hour (they handle calls in order of importance...), they e-prescribed some anti-nausea medicine to my Wegmans and Paul took the girls to pick it up. After taking one at 5pm, I could hold down a little Gatorade and soup and then went to sleep.

Oh, and somewhere during my awfulness, I had Paul call to cancel the port-insertion surgery. In my non-medical opinion, I didn't think a surgery was a prudent plan after a day of puking. Dr. Cooper agreed.

So the non-italicized summary of Thursday is: CT scan complete and clear of cancer. Bone scan complete and awaiting results. Children and husband safe, Shari asleep.

This morning, we all got up and brought the girls to Holly's for yet another playdate. Then Paul and I were off to the chemo-teach. When Maggie walked in, we started our chit-chat because she's so wonderful, but then I interrupted and said, "Wait. The bone scan!" and she laughed and said, "Oh yeah. That! Here you go. All good." and handed me the results. Now we could all laugh and happily go through my lessons about chemotherapy.

That last sentence is yet another reason for the title of this blog. Two months ago, I'd never have known how delightful and fun it could be to learn about your body receiving poison for 20 weeks straight. But there was no sadness or fear in it at all. I got another care package (thanks Positively Pink Packages!), we toured the infusion room (I'll have my own TV during my 4-hour sessions), and I signed up for two clinical trials. What fun!

Just before we left, I was handed another print-out of my next 5 appointments for the coming two weeks (and that doesn't include the port-insertion surgery...calling Dr. Cooper on Monday to reschedule that). My job for this weekend is to line up the childcare for those, but it feels so good to have a plan for the next 5 months of my life that I now feel like I can work with this. I'm about to check out Google to see if there's a way I can make some sort of all-access calendar where people can sign up to take the kids as I post appointments. Anyone know of an easy group calendar online?

First chemo session is going to be April 12 (Elizabeth's birthday...BFF since I was 5 so an easy date to remember). I'm sure I'll blog before then, but you can all circle that date on your calendar for when you'll hear about the Best Chemotherapy Ever.

Tuesday, March 27, 2012

And We Wait and We Wait...

They sure know how to wear down even the most optimistic of cancer patients. (By they, I mean the medical community, but nobody in particular.)

After a month of waiting to meet with our oncologist, who was to be the expert on how to treat and hopefully cure cancer, the day finally came. Dr. Kirshner, who we found out used to live a few houses away from our house (crazy coincidence number 3), is competent and friendly, but I had no real feeling either way about whether he's wonderful or not. But we were all ready for business...until...

One of the first questions Paul and I asked was, "How do we know if the cancer is somewhere else besides the boobs and lymph nodes?" The answer is that I'll get a CAT scan and a bone scan to see. More waiting.  At least this wait isn't long. On Thursday morning, I go in for the CAT scan and bone scan at 8:30am. Then they should have the results for us within an hour or so. Once that's done, and if it's negative, they can seriously book me for my chemo and radiation. But if it's positive, the whole thing changes and we go into the realm of containing a stage 4 cancer and improving quality/length of life.

Everyone at Hematology/Oncology Associates of CNY (nurse, researcher, doctor) seemed to think that all of the cancer was just what we've already found. But that's just based on their experience. Walking down the street two months ago, based on every experience we've all had, I'd be assumed to be completely cancerless, but lo and behold, our experience was wrong.

So while I thought I could report a chemo plan to everyone today, it's just more waiting. They're wearing me down for sure. And I guess I have to do more of this "hope for the best but prepare for the worst" thinking.

My big positive today continues to be how much support I've gotten, both locally and virtually. So many moms have volunteered to take Maggie and Reese during all of these appointments. Practical strangers are cooking meals for us. Facebook friends near and far are sending their thoughts and well-wishes. And invisible friends who read my blog posts are wishing me well. It takes a village to deal with breast cancer.

I Can Do This Positive Spin Thing

After a little tossing and turning (or more accurately, gently repositioning my sore body) last night, I came up with an analogy which helps with that psychological game from last night:

If you are told that you are considered "overweight" from 160-200lbs and "obese" above 200lbs, does someone who is 199 really have a significantly better prognosis than someone at 201?

Yesterday afternoon, I went from thinking the scale was reading 199 to finding out that it really read 201. Totally doesn't change my prognosis or treatment, just has a new name. Unfortunately, I can't skip a couple meals to change the results, but Dr. Kirshner will tell me in a few short hours what we CAN do about it. Tick tock, tick tock.

Monday, March 26, 2012

Woot Woot!

I forget to mention: The drainage tubes are out! Yeah!!!!!

The Big Psychological Game

I was so prepared for the worst today. I was mentally ready to hear that they had found cancer in all of the lymph nodes and they'd need me in for more testing because there were signs that cancer had spread to other body parts.

So when Dr. Cooper came in and told us that the nodes that he hadn't checked before were all negative, Paul and I just about held a victory party in his office. (Okay, not quite, but it was a relief to hear that we were not living our worst nightmare.) Somewhere in there, when he was verbally telling us about the pathology report, he mentioned 3 out of 3 nodes being positive, but 0 out of 8 others being negative. Quick addition led me to believe that there was the 1 sentinel node, plus the 2 others he mentioned to Paul after surgery. 1+2=3 positive nodes, right? Then he told us that the tumor from my breast was measured at 2.5 centimeters, so my cancer was classified as "T2, N2" (T for tumor, N for nodes).

I texted Lisa, who was babysitting the girls, that it's still the Best Breast Cancer, and Paul and I started preparing for tomorrow's visit to the oncologist to find out about how this chemo will get rid of this once and for all.

After putting the girls to bed, we've finally had a chance to read the paper Dr. Cooper gave us and put it together with the books and pamphlets we've collected about breast cancer. Turns out, Dr. Cooper's a lying liar.

The report we're reading lists 1 out of 1 sentinel nodes positive; 3 out of 3 other nodes positive; 0 out of 8 additional nodes positive. So that makes a total of 4 positive nodes, right? 1+3=4. So we looked up "T2, N2". According to our books, that means the Tumor size was 2-5cm and there are 4-9 positive Nodes (!). Which again confirms that his original mention of 3 nodes wasn't telling the whole story.

The books are telling me that my tumor with 1-3 positive nodes would be classified as Stage IIb. But with 4-9 positive nodes, it's Stage IIIa. Here I am, harping on a label over one little lymph node. I let my guard down for a few hours, and it backfired. It's all a big psychological game. 

So did Dr. Cooper really lie? Probably not. Just gave a different impression that, to our untrained ears, sounded nicer. I don't really hold it against him. He was just putting some spin on the results because in his mind, what's the difference between 3 and 4 nodes?

The difference is the label. Just like I don't know whether I should count myself as being diagnosed with breast cancer in my 30's or 40's (remember, my 40th birthday was between my mammogram and my biopsy), I was prepared for the label of Stage III, then Dr. Cooper made me think it might be II, and now it's III.

But back to the stuff I can control: I want the chemo regardless of IIb or IIIa, because there are cancer cells in my body and they need to go away. (By the way, there's also an M score which I don't have yet which determines if there's cancer anywhere else in my body. The oncologist will tell us how to figure that one out.) Let's just find out what the plan is there and get it started.

Okay, sorry this has been a babbly post. It's just where my brain is tonight: I have very little new information (one new node), but feel like I've been handed so much more. I think I'll be better after the meeting with Dr. Kirshner tomorrow because we'll have that wonderful, comforting path to follow again.

Sunday, March 25, 2012

Planning Ahead

Tomorrow and Tuesday both have important, life-changing appointments, first with Dr. Cooper (surgeon) to get the pathology report telling where that cancer was/is in my body, then to Dr. Kirshner (oncologist) to find out what we're going to do about it. Both Paul and I are anxious beyond words, not only because we could hear some more yucky news, but because we have been just sitting around for a month waiting for these appointments. (Yeah, there was a major surgery in the middle, but that has no affect on our futures.)

So right now, since I feel like I need to be doing something, I'm planning out the spring and summer for the girls. We are certain there will be chemo, based on the lymph nodes they already found, so I know that I won't be my usual active, fun, getting-down-and-dirty-with-the-kids Mom that I usually am. So how can I keep them from noticing the change in me? Buy them a swing set! I'm doing some serious calculating with our bank accounts, some Craigslist searching, and some brainstorming about manly-men who can help Paul move and build one. Maybe by next weekend, the girls will have a park in their own backyard.

Also, I signed the girls up for two 2-week sessions of Camp Iroquois (day camp) for the summer before this whole breast cancer thing came about. Now I'm thinking that I can double that and have the kids at day camp all summer. More bank account finagling, but it'll give me every morning for eight weeks with a break from 9-noon. I think a Mom going through chemotherapy deserves that, right?

With those ideas, plus with all of the childcare help we've been offered from local friends, I'm getting more and more confident that at the end of this whole experience, the kids will think it was the Best Breast Cancer Ever, too.

Aside, in case you're wondering, I still have the awful drains in, but I made it to see The Lorax at Carousel Mall yesterday and to the Dome today for Syracuse vs. Villanova lacrosse. Lots of sitting on my booty involved in those activities, but it's a step in the right direction. I sometimes even forget to take my pain meds, but after about 6-8 hours, I definitely notice the difference, so we'll continue those for a little longer. Paul goes back to work tomorrow and the girls are prepared that I'm still going to need their help, so I'm sure we'll be okay.

Wednesday, March 21, 2012

Holy Moly, the Support is Overwhelming

Since I took a deep breath and shared my news via email and Facebook, the support has been amazing. As of about 7:00 last night, there was more activity on my Facebook wall than on the day of my birthday, which is quite an accomplishment since FB actually reminds people to post about a birthday. And this blog's chart of the traffic went from measuring in increments of 10 to measuring by 100s. So my lesson to you is that if you want to feel loved and hear from great friends from years' past, get cancer.

Seriously, my real hesitation was that I would tell someone and they would cry or get all worried and I'd have to cheer *them* up. But everyone followed my ground rules and I've received so much advice and encouragment. Did you know that I'm a rock star? I certainly didn't.

For the update about me: I am able to get around the house pretty well and was a passenger in the car while driving Maggie to school yesterday. But this morning I woke up feeling weak and dizzy, so maybe I should work on eating more despite my lack of appetite. At the hospital, they were bringing me meals so I picked at them because they were there. Here, I choose when and what to eat, so I need to get myself on a schedule.

I have been debating whether I want to call Dr. Cooper this week to find out the pathology report in advance of our meeting next Monday. Do I want to know how many more of the lymph nodes had cancer in them and just sit on that information? I asked Paul, and though he initially said he didn't have an opinion, we reasoned it out that it doesn't really affect what we know is coming: chemotherapy and possibly radiation. Since we don't know anything (yet) about the different types and levels of drugs there are, we don't need to know right now. I'm bracing for the worst (like, all of the lymph nodes had cancer in them and we have to scan your body for where else the cancer may have gone) but hoping for the best. Either way, once we know, we'll be ready to treat it.

So for now, I'm just going to heal from the surgery and wait until Monday to take the next steps.

Monday, March 19, 2012

I'm Home

The doctors and nurses totally left it up to me about when I should leave the hospital. At first, I was baffled, thinking that they are the experts and shouldn't they know when I'm ready to go home? After two days of being examined every few hours, though, I realized that they each don't know that much. Dr. Cooper is an expert on cutting people open and removing sick parts. Dr. Baum is excellent at putting in new boobs and making you feel good about them. And while one nurse may be good at sympathizing and another may be good at controlling pain, NOBODY is an expert at everything. After I figured that out, I decided that I know my body best and I could make the correct phone calls if I decided that something was wrong. So I packed up and went home yesterday afternoon, about 48 hours after the boobs came off.

So far, I'm really just weary. I'm in much less pain than I'd have ever expected. Truthfully, it's more sore from using different muscles to sit up and roll over than it is hurting from the stitches. But everything takes a lot of effort and occasionally I feel weak, so I'm spending a lot of time in bed and taking naps.

I won't go in to much detail because even Paul is grossed out by this, but the most difficult thing so far is the drains. They hang off the sides of my body and I have to monitor how much fluid is coming out of me a few times every day. I have no problem with doing that, but it's a pain to have four extra appendages and being afraid to roll on them. I'm looking forward to having them out almost as much as I'm looking forward to meeting with the oncologist.

I'm not sure how much I'll update in the next few days. Don't worry about me: I'm sure I'll be getting gradually stronger. It's just that I like to use this blog to sort out information I'm given and I'm in a holding pattern right now. I have appointments next week with both Dr. Cooper to go over everything they found when they took off the boobs and lymph nodes and then Dr. Kirshner, the oncologist, to talk about what to do with that information. That's when I'll have a bit more to say.

But you never know. Maybe the kids will do some funny things this week and I'll have to write about it.

Saturday, March 17, 2012

Surgery: Before and After

Along with all of the hugs and support I received before coming to the hospital, many people had small tidbits of advice, all appreciated. At the moment, the most relevant is from Ms. Karen at the Manlius Library. Based on an experience she had, she warned me that feeling depressed after anesthesia is completely normal. I wouldn't say I'm exactly depressed, but my "Best Breast Cancer Ever" is now looking like an average, run-of-the-mill breast cancer.

Arriving here was better than expected because instead of waiting rooms and check-in forms, I was shown right to my hospital room. Yeah, I had a roommate, but it was nice to have a drawer for my stuff and an outlet for the phone charger. The whole morning went smoothly, and with the exception of a little blip when Dr. Cooper showed up wearing a Red Sox head covering with his scrubs, there weren't any surprises. Paul was the one finding rays of sunshine, pointing out that it doesn't matter what team it is, as long as it's *his* lucky team. Also, upon hearing that I was Dr. Cooper's third surgery of the day, Paul explained that he'd be warmed up for me.

They started the anesthesia IV when I was on my stretcher just before wheeling me to the operating room. I tried my best to stay awake long enough to see the inside of the room where they'd be cutting me, but I didn't make it.

Waking up was uncomfortable, but surprisingly, not because of the pain. I felt nauseous and actually puked a few times from the anesthesia drugs. I do remember everything, though, and found out that those darn lymph nodes had cancer in them, so off they came.

By evening, Paul went to get the kids and I was bold enough to ask the nurses to take me on the walk they'd challenged me to try. I made it as far as the door to my room before getting dizzy and puking again. But by this morning, I walked a full lap of the fifth floor at Crouse Hospital. Yes, I'd easily sauntered down the same hallways twenty-four hours earlier, but situations change quickly, I've learned.

After a morning visit from the girls, who grew bored of Mommy in a hospital bed in about 90 seconds, I started catching the vibe that the nurses were planning to send me home today. What? A double mastectomy gets you one night in a hospital these days? But after taking to the surgeon on call when he came to check on me and then Dr. Baum, who had to check out his reconstructive work, it seems that doctors are more reasonable about longer recoveries. I think the main thing is that I was on a hallway with rooms meant for surgery recoveries, and since these surgeries are only scheduled for weekdays, the nurses wanted to empty their rooms to get themselves home for St. Patty's Day.

So, with the doctors' approvals, here I am on a longer-term recovery hallway and I'll go home tomorrow. I'll skip the details of how I've learned to empty the drains of fluid that are sticking out of the sides of my chest, or the Frankenstein stitches horizontally across both boobs, and just enjoy dinner being served to me in bed.

But back to the darn lymph nodes. Rationally, I know that finding cancer cells outside of the breast is just one more thing to treat. I'll still get the chemo I've been prepared for, and may get radiation as well, in order to specifically target the places where those cells were found. But somehow I'm not feeling that the full pathology report that Dr. Cooper will provide for us next week will inspire me to draw any smiley faces. And for the rest of my life, I have to worry about lymphodema.

Thursday, March 15, 2012

Telling the Kids

From the beginning, Maggie and Reese have known that I was going to a doctor who could check my boobies. In fact, they were there for the two visits to Dr. Houck before she referred me for a mammogram. Once we got the diagnosis, I started mentioning that my boobies are sick, but it totally didn't affect the girls. I could have told them that I'm wearing jeans or we're eating lunch today and gotten the same reaction. But I knew that I needed to get the point across before spending a few days in the hospital because THAT is a big change.

I did some Amazon research and found a book called "When Mommy Had a Mastectomy" and ordered it. It's one of the few books that has "Mommy" in the title instead of  "Mom", so I knew it was more likely to be age appropriate. Once we got a copy of that book (actually, two days before the Amazon order arrived because Leo's mom had a copy to loan us), both girls really started understanding that there's going to be an operation. Maggie actually carries the book around and talks about breast cancer pretty regularly.

So here's what I know they understand: Mommy's boobie is sick with something like a germ that's called breast cancer. But it's not a germ that they can catch, and it's not something that will get better like a cold, so the doctors have to cut the cancer out of my boobies. Then, I will not have boobies for a while and I will get new boobies that don't have cancer. (I didn't explain about the expanders that will be filled up. To them, flat equals no boobs, so it doesn't matter how I'm getting the new ones). They know they'll go to Anna's house all day and Daddy will come back before bedtime without Mommy. Then, they'll get to see me in the hospital on Saturday. When I come home (nobody knows when, and to the girls, 2 days or 4 days doesn't make much of a difference), they will have to give me leg hugs, elbow hugs, etc, but no hugs that touch my boobies. Then they can help me get better by bringing me tea and lemonade (that was Reese's idea).

I have been taking every children's book about cancer out of the library that I can. (I have six, I think, shipped to Manlius from every library in Onondaga County.) My biggest issue with these books is that, without fail, they ALL show people sad and crying. I keep explaining to the girls that some people are sad or scared, but that we just want this fixed. I guess the majority of women would have had some days where they cried in front of the kids, so the books are letting them know it's normal.

A book we got today showed a mom crying when her hair was falling out. I told Maggie that after my operation, I will have something called chemo that will get rid of all of the cancer in my body but it also makes hair fall out. But I told her that when my hair falls out, I won't think it's sad, I'll think it's funny and we'll all laugh at my silly hair. Then we'll go shopping for rainbow hats. (If you've been around the girls at all in the past few months, you know that for something to be attractive, it must be rainbow colored.)

Another problem about the books is that many of them have the child asking the mom, "Are you going to die?" Why should I put that question in their heads? So I've been either skipping the line or saying, "Cancer can cause some people to die, but the doctors will fix it so that Mommy won't."

So, in general, I'm being completely honest with the kids. Reese has been pretty cranky all week and has had a few potty accidents, but I don't know if that's related to the cancer thing or just because almost-3-year-olds go through stages.

Tuesday, March 13, 2012

The Emotional Side

As I mentioned before, I had the time from Feb. 24-Mar. 1 to digest the fact that Dr. Montgomery had given me a 99% certain diagnosis of breast cancer based on his experience. So by the time the actual results came in, I had gone through my grieving stages and was ready to accept the diagnosis and figure out how to fix it.

During that week, I focused on the words "fight" and "warrior", and I was worried that I'm NOT those things. From the moment I got the "I'm almost certain this is malignant" talk, I was thinking "fix it" and "treat it". That's not ME fighting, that's the doctors doing their jobs for me.

I told this to Paul, and he pointed out that some women (those who would be locked in their rooms with the shades drawn, bawling their eyes out, questioning "Why me?", and waiting for someone to help them) NEED an attitude adjustment. Thus, the pinky-pink ribbon-brigade comes out and tell them to be fighters and warriors.

That helped me realize that I don't need those pep talks. I never stopped living my normal life, and doing so is my way of fighting.

I think the lowest point I had was when I was crazy enough to look up survival rates and saw things like 80%. But wonderful Dr. Cooper pointed out that those statistics include everyone who is diagnosed, and not everyone chooses the most aggressive treatment. For example, someone like me might decide to try a lumpectomy first, or be afraid of losing her hair and avoid chemo. So if we are aggressive, those stats aren’t for us. Dr. Alpert said that she even sees people in her oncology practice who "give up" on their treatment because it makes them feel like crap. So THEY are included in the 20%, and I'm completely the opposite, so I'm not.

My biggest on-going mental freak-out was about the girls’ futures, but I found something in my care package (yes, like when you go to the OB for your first pregnancy and they give you a goodie bag, you do get a “Welcome to Breast Cancer” bag) that helped me out there. It said that a young child who asks “Are you going to die?” has no concept of the long term. Five years is more than their life. So if I just say “No, I’m not going to die today, tomorrow, next week, or next month”, they will be as confident as ever. That’s not saying I’m calm about it, but it just helps me handle the “what ifs” a little better.

Another thing that has helped about telling people my diagnosis is that everyone has a story or two about a best friend, relative, co-worker, etc, who was diagnosed with breast cancer in their 30s or 40s and they've all lived on. Yes, I know there's the other side to the story, but the more I hear about normal people surviving, the easier it is to distance myself from those who do not.

My current worries are (1) getting all of my wonderful helper friends in touch with one another so we can all figure out how we're going to make it through this and (2) avoiding fluke incidents during Friday's surgery. Since I can't do anything about number 2, I think I'll go write an email to my helpers right now.

The Title of This Blog

When Dr. Montgomery was giving me my pathology results, in the same minute that he confirmed that I have breast cancer, he went on to tell me,  "The cells are grade 2, and I'd feared they'd be grade 3, so that's good." He also said,"Your estrogen and progesterone receptors are positive, and that's good," and "Everything else came out negative, so you don't have to worry there."

Then Dr. Cooper gave me the flattering news that I don't have enough fat in my tummy to use for new boobies, so I'd have to get silicone. Talk about finding a way to cheer up a woman when she's down: Medical evidence that I'm not too fat.

And when Dr. Alpert (Danielle's mom) called to go over the pathology report, she confirmed Dr. Montgomery's news and included such encouraging details as, "The satellite lesions are in the same quadrant of the breast as the original one, so that's good" and "If you're going to have cancer, the right breast is better because it's further from the heart."

I know that these are all doctors who want me to have faith in their profession and continue on my aggressive line of treatment, but in general, they are giving me the impression that I have The Best Breast Cancer Ever! Aren't you jealous?

Crazy-Good Coincidences

After confirming that my surgery was on for Friday, March 16, I took a deep breath and made a few phone calls to tell a few friends and family. One of these calls was to Devorah, my "boss" at Sunday School, who will have to find a substitute for me whenever I'll miss over these next few months.She was sympathetic, offered to take the kids whenever, and added me to the temple's prayer list (yes, she knows about my atheism).

Then she called back a few hours later and said, "Leo's mom (a boy in my class) is a physician at Upstate. I know she does some work with breast cancer. You should call her." So on a Thursday night at 9pm, I did. Turns out she is the head-honcho-bigwig-in-charge-of-everything-breast-related at Upstate (the place were it's hard to get in). She started the conversation by emphasizing that this is not as big a hurry as my body/mind are thinking it is. It's okay to take a month or so to figure things out. The she asked about what's going on and asked doctors' names. She said she'd never seen anyone who'd gone to Dr. Cooper (breasts aren't his main thing, and she deals only with breasts), and although she didn't want to say anything bad, she wanted me to make sure I had someone who was best for me.

So at 9:30pm, she called Dr. Kort, THE breast surgeon in the area at home and got me an appointment in the morning. Though I didn't go into the phone call to her looking for extra help, just advice about how to handle my situation, there I was with another option. I was emotionally torn: I knew it was the right decision to see the best of the best, but even she said that it's not "brain surgery" and I liked having this all lined up for next Friday with childcare and everything. I decided to be honest with this breast guru and ask her advice about why I'd be better off with her than Dr. Cooper.

In the morning,  I met with Dr. Kort, who was wonderful and loving and knowledgable, who spent almost an hour answering my questions and then gave me a hug and sent me off to Dr. Cooper whom she trained. Seriously, she gave the exact same answers he had and she admitted that I'm better off keeping my appointment and knowing that my second opinion doctor agrees on all points. She assured me that I'm in good hands and she's going reassure Leo's mom, too. So Friday it is, but now I know that I didn't just pick a surgeon out of fear and time constraints. I'm making a good decision.

When I got home from the whole ordeal, there was an info packet in the mail from the oncologist's office. They'd assigned me a doctor and set up an appointment for after surgery with Dr. Kirshner. I was flipping through their practice's brochure and one of the oncologists there is ANOTHER mom from Sunday School (Danielle's mom). SERIOUSLY?!? There are 11 kids in the class and two of them have moms who deal with breast cancer? What a world!

I called her immediately just to touch base and let her know that I'd be a patient there. She called back a few hours later and said that she'd accessed my file from her home office (all digital now) and she went over my biopsy's pathology report with me line-by-line. She does radiation, and everything indicates that I'll be having chemo, but she's going to mention me to Dr. Kirshner so that he knows to expect me. And she says that I got lucky with my randomly assigned doctor.

I went from random breast cancer patient to a known person, just by telling people. I guess you never know who knows whom, so I should learn to just suck it up and tell people.

Sunday, March 11, 2012

Explaining This To Others

Nobody wants to be the bearer of bad news. Before I told anyone mine, I had a week to digest what was happening (while I awaited biopsy and results), so my emotional state was far beyond that of someone just finding out. Therefore, I want to preface my disclosure to anyone with "You may NOT cry. I do NOT want sympathy. No hugs, because they will just make us emotional. Just ask questions and offer help if you want to."

The few people I have told so far have been pretty good with following those ground rules, although I haven't actually laid them out in so many words. But I know they want to ask lots of questions and might be biting their tongues. So here's what I've learned in the past ten days:

The only thing people know about breast cancer is that it has "stages". When breast cancer starts to grow, you don't immediately feel a lump, so unless you're really lucky and someone has a great eye on a routine mammogram, most women skip the whole stage 1 thing without knowing. By stage 2, when you feel a lump, there's a possibility that the cancer has spread to the lymph nodes. If it's hanging out and spreading in there, you might be a later stage 2 or a stage 3. However, the only way to find out if there's cancer in the lymph nodes is to operate, take one out, and check. Instead of scheduling a separate surgery just to "stage" my cancer, it'll all be done at once. During my double mastectomy, they'll do something called a Sentinel Node Biopsy. Immediately, they'll know if there's cancer in the lymph nodes and if so, they'll take out all of the nodes that could possibly be affected, an axillary lymph node dissection.

So to answer your instinctive question, I won't know my stage until after my mastectomy.

On to the fake boobs questions: After Dr. Cooper takes off my right breast and does whatever he needs to do with my lymph nodes, he will walk on over to my left side and Dr. Baum will go to work on the right. Dr. Baum puts in an expander which is basically a bag that can gradually be filled with water. Then he closes up the flap and will do the same to the other side when Dr. Cooper's done there. Over the course of a few months, as I heal, Dr. Baum will gradually put water into that expander to stretch my new skin to a desirable breast size (in my case, smaller than these real things). When we reach an agreeable size, I have another surgery where the expanders are replaced with "permanent" silicone implants (which can last up to 20 years, so I know there will be more breast surgery, but whatever).

Another option would be to take some of my fat from my tummy or butt and insert it into my chest to make new boobs. However, wonderful Dr. Cooper informed me that I'm clearly not a candidate for that. Dr. Baum backed him up by saying that I'd only have enough for a small B cup. My real reason for not exploring that option is that it takes much longer to heal. I want to be back on my feet and playing with the girls asap.

So then what about the chemo, right? Since there are cancer cells growing in my breast, some of them might escape to my bloodstream. These stray cells will not cause a tumor or grow elsewhere right away, but five, ten, or twenty years from now, that breast cancer might be in my stomach or brain or where ever. To prevent that, they have to kill any stray cancer cells by poisoning them. If I were older, this step might not matter, but since I have many years to live, we want to be aggressive and get rid of them.

Chemotherapy decisions are made with an oncologist, whom I have yet to meet. From what I do understand now, though, my treatment will depend on that staging that isn't done yet. What will happen is I'll go in to the oncologist every two weeks or so and they will hook me up to an IV which gives the drugs. Then, for a few days, I will feel like I've been hit by a truck. I'll stay in bed and not feel like doing anything. Gradually, my body will heal, and for the second week I might be back to normal. Then I go back and repeat the process. Whether this goes on for 2 months or 6 months will depend on how much cancer they find. It also depends on how my body responds physically. If I don't recover quickly, the chemo might be every 3 weeks or something, extending the process.

Yes, this is the lose-my-hair kind of chemo. I think I'm more of a head scarf and hat person than a wig woman, but I guess we'll see. We all know that chemo makes people throw up, too, but the non-oncologists have informed me that there are now drugs to control the worst of the side effects, and those can even be tweaked to help with the symptoms that I'm personally experiencing.

So my guess is that by Halloween, this'll all be history.

Finding Out

For a few days in late January, my right boob felt weird. It didn't necessarily hurt, but it just felt a little different, the way you might say, "My stomach's feeling a little off today." The weird feeling prompted me to poke around, and I found a clumpy area. I wouldn't necessarily have called it a lump, but just an area that was thicker than the rest of the breast. So I called Dr. Houck who saw me that afternoon. She felt it and said that it seemed to be a cyst. She suggested that I come back after my next period because cysts will shrink based on the time of the month. On February 6, I went back and again she said,"It feels smaller to me, so it's probably a cyst, but I'll refer you for a mammogram and ultrasound anyhow."

Since I felt no urgency, I looked for a day that would be convenient to have the girls in childcare and scheduled the mammogram for February 24, two days before my 40th birthday and party. When that day came, I paid for 3 hours of daycare at the YMCA and figured I'd see the doctor and then hit Wegmans to shop for some birthday party stuff.

The mammogram and ultrasound technicians were friendly and chatty, although I did think that the ultrasound tech was taking an awful lot of measurements while I laid there. She left and came back with the radiologist, Dr. Montgomery, a few minutes later. He felt the lumpy area and then told me to go sit down. Before he even said anything, I blurted out, "Cut them off."

He went on to read me the "You have cancer" riot act. Seriously, he was friendly, but left no doubt in my mind that what he saw on the ultrasound and mammogram was not a cyst. I later found out that what they had seen was given a BiRAD score of 5 out of 5, meaning it had every characteristic that a malignant growth would have.

I was left alone in that room to call Paul, and then they scheduled me for a biopsy on Tuesday. That meant that I'd live through my birthday weekend, including my 40th birthday party, knowing that I had breast cancer but not knowing a thing about it or what could be done.

The time crept by for Paul and me, but when Tuesday arrived and I went back for my biopsy, Dr. Montgomery again reassured me, in case I'd forgotten, that it was definitely cancer based on what he felt while poking around in there with a needle. (I know I'm making him out to be the devil, but he actually was quite a nice guy. Just honest.)

The good thing about having such an obvious cancer was that they were willing to schedule me to see a surgeon even before the diagnosis was made. Throughout the whole visit, I'd been told that they work with the CNY Surgical Physicians and Drs. Congelli and Schu were the ones who did breast surgery. However, when I asked for an appointment as soon as possible, they put me in with Dr. Cooper. I figured if I didn't like him and his knowledge of breast cancer, I'd just go find someone else. But I just wanted someone who could *help* instead of diagnose.

On Thursday, March 1, Reese and I were in McDonalds getting lunch because it was Maggie's first day of Lunch Bunch at school. I had ordered and paid and they were getting the food onto the tray when the phone rang. Dr. Montgomery confirmed that I have Invasive Ductal Carcinoma, grade 2, as I carried my tray to the table. I ripped off some of the Happy Meal bag and took notes as he told me that my estrogen and progesterone receptors are positive and everything else is negative. He said that those are good qualities to have. I felt such a huge wave of relief to actually have a diagnosis that I wrote smiley faces on the scrap of paper.

The next afternoon, Paul joined me as we went to Dr. Cooper's office. After over 90 minutes in a crowded waiting room, I played my cancer card for the first time. I cried to the receptionist that I shouldn't be kept waiting for so long on the day after being diagnosed with breast cancer. She was sympathetic and soon I was in an exam room. My tears were out of frustration, not because of the cancer, but she had no idea. And I really did understand when she said that Dr. Cooper was held up in surgery (of course I'd want him taking my time on me), but that waiting room was hot and crowded, so I did what I had to do.

Soon, Dr. Cooper came in and was wonderful and friendly and knowledgeable. Paul and I looked at each other at one point when he stepped out and breathed a joint sigh of relief. We'd found our guy, and this would be fixed. He spent almost an hour on that busy Friday afternoon answering every question I had and reassuring me that this is fixable.

His suggestion right from the beginning was a double mastectomy, just as I'd hoped from the beginning. The lump I'd felt has two small satellite lesions, which tells that my breasts are predisposed to cancer. I don't want or need them anymore. Get them off me and get that cancer out of me.

He also assumes that I'll go through chemotherapy. The frustrating part here is that a surgeon is a completely different doctor from an oncologist. Although Dr. Cooper could answer questions, he is not the guy who will be doing any of the post-surgery stuff. Treating the fact that my body grew some cancer is done in a whole different branch of medicine.

Dr. Cooper had his schedulers set me up with a plastic surgeon because the easiest way to get my new fake boobs is to do it all in one operation. I got a call on Monday that I'd be seeing Dr. Baum on Friday, March 16, and I said, "No way. I'm not living with cancer in my body for two weeks just waiting for an appointment with the plastic surgeon." I called Dr. Cooper's schedulers back and within an hour, my appointment had been moved up to the following day.

Dr. Baum is knowledgeable and experienced but has the bedside manner of a robot. After he explained to me what my options were, what would be done, and showed me pictures of his work, I asked him what the risks of reconstructive surgery are. He rattled off a monotone list, "Infection, Blah, Blah, Blah, Death..." I almost laughed when I realized that this guy's social skills are completely unrelated to his ability, and I told them to book him.

On my way out, the schedulers told me that it looked like both surgeons were available on Friday, March 16, so that's when the boobies will come off. I got a call the following day confirming it, so it became a matter of just counting the days.